I was told over Thanksgiving that I
needed to do a blog update. Well, here I am 4 days before Christmas,
doing just that. Actually I'm just going to update on Colby's recent
Cincinnati Children's visits.
My dad, a nurse and I took Colby to
Cincy on Tuesday. He had one appointment that day to meet his new
endocrinologist. Well that didn't happen because she had her baby the
day before. We met with some other endocrinologist and discussed
Colby's recent DEXA scan. One of the 3 measurements they take was
improved – the other 2 not. Colby is going to continue his Zometa
infused for another year or so, then we might discuss him taking a
break for a while since the medication isn't really helping to
improve his bone density. However, it is helping to prevent bone
fractures, and that's our main goal.
Yesterday we had to be back at the
hospital at 7:30, yuck. Colby's first appointment was with
ophthalmology. Colby's prescription has only changed slightly.
Basically it has gone from 20/20 to 20/25 if we keep his current
glasses, which is what we're going to do. That's what the eye dr
suggested. I asked her about Colby getting contacts. I said I would
be the only one to handle them. I certainly don't expect the nurses
to go sticking their fingers in Colby's eyeballs. But the
ophthalmologist said because Colby has astigmatism, she doesn't
recommend contacts. Something about he doesn't blink enough, and
contacts that you wear with astigmatism you need to blink a lot.
Something, something, blah, blah. Next we headed to the lab where
Colby had to get a peripheral blood draw. I requested they go ahead
and call the Vascular Access Team since Colby is a horrible stick.
She used an ultrasound machine and was able to access Colby on the
first time. Yay! They drew 8 vials of blood, plus Colby had to give a
urine sample. What I thought would be a horrible experience ended up
being easy-peasy. Then we went on to pulmonary lab to test Colby's
vent settings. That was painless, and I was even able to get some
vent connectors from them. Score! His last appointment yesterday was
PT. They evaluated Colby to see if he has made any improvements since
being on Spinraza. Well duh, we all know Colby has done amazing
things while receiving this drug. Unfortunately, the increased
movements we're seeing in Colby don't add up to points on their
scales. I'm calling bullshit! But they made notes about Colby having
a better heart rate, vocalizations, stamina, etc, along with their PT
measurements. I don't care what they say, in my books he has done
wonderfully on Spinraza, and I won't let any test tell me different.
We were all over that dang hospital. Started in Section E, then A,
then C, then back to A. Very busy, very exhausting day by the time it
was finished.
Today we went to Neuro Clinic. Meaning
we show up, get Colby comfy on the exam table, then all the doctors
come to us. Ah, much easier. Colby saw the nutritionist, rehab
doctor, pulmonologist, and neurologist. We're going to tweak Colby's
formula recipe a bit, both calorie and fluid intake adjustments. No
vent settings changes at this time. Then we hightailed it down to
Ortho Clinic. They took x-rays of Colby's spine. Every time I see
those, I'm amazed at the amount of hardware running down my kid's
back! X-rays were fine, no worries. Thank goodness.
Got home about 4pm. Got Colby settled
and most of the unpacking done. I'll work on that some more tomorrow.
The rest of the night involves not much. Colby is in his room doing
YouTube on his eye gaze. I'm lounging on the couch in front of the
fireplace, yelling at Cupcake when she tries to reach up and eat my
houseplant. I'll blog again soon and fill in the last couple of
months. Yep, I'll get right on that.
Ok, I'll try.
